How a Brooklyn mom fought the system when her son's surgery wasn't covered by insurance
Who do you turn to when a health insurance company denies you much-needed care?
In New York, there are state-appointed outside organizations that can review and overturn denials.
That's how Brooklyn mom Nadine Friedman managed to fight the system – and win.
Coverage denied for child's $27,000 surgery
Friedman and Jared Roberts have watched their 9-year-old son, Ozzie Roberts, fight through Goldenhar Syndrome. It's a rare condition that, according to medical records, led to pain, redness and growth problems in his right ear.
"A lot of nights during the week, just midway through the night, [he was] just crying, screaming. It was really tough to see," Roberts said.
So, back in February, doctors performed what's known as an ear-pinning surgery on Ozzie, and it worked.
But then, his parents faced a different kind of pain: a months-long back-and-forth with an insurer that denied coverage of the surgery. Aetna said the $27,000 procedure was "cosmetic" even though Ozzie's doctors wrote that it was "medically necessary."
"I would absolutely never do anything like this unless it absolutely impeded on his health and his life," Friedman said.
The family's appeal to Aetna didn't work, so they filed for an external review, which allows a state-appointed outside organization to decide whether to reverse a denial.
Aetna says the doctor's "original submitted billing code is typically for coverage of a cosmetic procedure and warranted further review." The company added it recognizes "how challenging a health care episode can be for ... families," but Aetna would not agree to an interview with CBS News New York.
Earlier this fall, the family learned their external appeal worked and Aetna will cover the surgery.
"Which is great, but it's only because I have a flexible job, time to document these things," Friedman said. "I'm really pushy, I'm fighting these things, and in the end, you have to become, like, a part-time insurance lawyer, basically, to do these things."
Despite getting help, Ozzie's family says the process was still a struggle.
Friedman is now fighting for changes to federal law. She's pushing for a bill called the Ensuring Lasting Smiles Act that would require insurance companies to cover necessary treatments for people with congenital anomalies or birth defects.
Majority of external appeals overturned
Researchers Ayesha Rahim, from Brown University, and Joseph Dov Bruch, from Weill Cornell, study how often these state-appointed outside organizations do overturn denials.
"We did find that a majority of external appeals are overturned," Rahim said.
They found that 52% of denials that reach external appeal in New York State last year were reversed.
"It could be also because of human or technological error. It could also be because of ambiguity in terms of the policy. And perhaps most concerningly, it also could be because of inappropriate insurer behavior," Dov Bruch said.
CBS News New York took our questions on denials and appeals to The New York Health Plan Association (HPA), a nonprofit trade association that represents about 20 major insurers in New York.
"The vast majority of these services get provided," NYHPA CEO Eric Linzer said.
Linzer said there are reasons why it's not enough for a doctor to say a procedure is medically necessary.
"Oftentimes, you wanna make sure that the services being requested abide by peer-reviewed evidence, specialty society guidelines," he said. "And I think it's important to note that there can be wide variation between and among different providers for particular services."
There are nonprofits and healthcare advocacy groups that will help New Yorkers file appeals.
